Happy New Year to All

After my last post I was able to sort out my medication by Christmas day I had started to feel a bit better.

My stomach had settled and I was able to have a great Christmas dinner that I was able to cook all by myself and it turned out great:-)
I was reminded about how things were last Christmas and how I was still recovering and only able to help with the cooking. I was also to suffer a setback in January that nearly lead to my death due to CO2 problems this all seemed like a distant memory but I was still concerned about how long I had low levels of anti rejection medication in my blood and was that going to be a problem?
I was very happy that after a repeat blood test was sent yesterday I received confirmation today that the levels in my blood were back to a acceptable concentration to prevent organ rejection developing.

I thanked God.Then thanked the clinic staff for the information.

This Christmas was the first time that I had let alcohol pass my lips since the transplant.I had a beer with my Christmas dinner and although it nearly put me to sleep I loved it!

I will now be repeating the experience for New Year and while doing the weekly shop, I stocked up with a few cans for a celebration over the New Year weekend!

The other thing that happened today is that I had my last session of pulmonary rehab at the gym and because of the last six weeks I am starting to see muscles on my arms again! I am keen to continue into the new year now I have got a start on my fitness.
I hope to get back into swimming as one of my sessions each week as this was a particular favourite of mine in the past before I got unwell and I miss the freedom it gave me.
I hope that it will help me condition my legs as I am still finding it hard standing for any length of time without cramps and pain developing. My long term hope is that I will be able to loose the weight I have put on and walk much further than I can at present.

I mentioned last year that I didn't know what I would do with my health improvements and what I would do with my life.This last year was a long one and it has taken me a lot of the year to get settled and start feeling like my self again.

I am confident about my health again but for a long while I was not.

I felt that my body wasn't my own any more, and a large part of me is not my own but someone else's that I am doing my best to look after and nurture. 

This gift that I carry in me makes me so humble. 

 I was offered this second chance at life I want to do the best I can with it.

I have decided to look into voluntary work that I can do and see how my skills can be put to good use within some sort of charitable organisation. I hope that I can continue to work with the support group at Harefield Hospital. I will continue to support others still waiting for a transplant through social media like Twitter and Facebook and continue to develop Transplant News on G+ .
I will be attending a speakers training session in the early part of January organised by LLTGL I hope that this will enable me to share my story and so promote Organ donation registration.

Future is looking bright :-)

 

 

Finally I would like to wish all the readers of this blog

A Great New Year in 2012

  Health, Happiness, Dreams & Hopes fulfilled

Goodbye to Hospital, free and clear, for now

I have escaped the confines of hospital for the present.
During the morning I recieved a visit from Richard Burbedge @AwoogaBurbs
who had been called back to clinic that day with similar problems of lowering of respiratory function and ended up being admitted to the downstairs ward as I was getting  the chance to leave.I felt for him and tweeted him all the best and hoped it would not be a long stay
 
It took till the later part of the day before the results of my Bronchoscopy biopsy  was returned and was found to be clear of anything abnormal. I was sent to the lung function room and had my FVC1 and FVC checked again. There was a bit of a increase in both values this was enough for a discharge summary to be prepared.
I rang my wife and let her know, packed up my stuff and had some food while I waited for her and my son to arrive.It had only been a short stay but the whole process had taken it out of both my wife and me
 I noted the new set of bruising on both of my arms from the IV steroids that had been started  over the weekend  and the failed blood tests that I had done.My arm have still not recovered from the previous stay in hospital and finding a place to site a cannula is becoming increasingly hard for the doctors.

The one thing I was not happy about was the large amount of steroids I will be on for the present I started a reducing dose starting at 70mg and dropping by 5mg daily until I get back to the normal dose of 10mg that I use, in several days time. This has left my feeling unwell and has upset my digestion, and has encouraged hamster look to my face and  bloating of my waist.
It took no time at all to get home and I enjoyed the drive as the motorway was clear. We dropped off at the local Mac burgers to get some food for my son on the way home. We got back late evening. The plan was to return to clinic in two weeks and I had a appointment to attend the Churchill Hospital the next morning as a follow up to my stay at the end of January

This is not how things worked out as when I got up today I was totally unable to get up. The combination of steroids causing my upset digestion, pain and general tiredness caused me to cancel the appointment and make a new one for next week. I then spent the rest of the day resting in bed until the pain was better.
Never mind tomorrow is another day I hope that I will be more recovered then:)    

The Leaves are Falling So is my Lung Function

What have I been doing?
A few things have happened since my last blog post about me lets fill in some details of events.

I got a mention on the website of a very dear friend and fellow blogger Marie Brew  at Live Love Speak This has led to people signing the donor register in their local area which made me very happy.
I would recommend this blog, it is filled with inspirational stories and Marie has great faith and is very committed to helping others achieve their potential.

I have been continuing to write articles on my website I Got Dug  That has now become quite time consuming at times, hence have had less time to write blog posts. I am enjoying being busy and it is helping to pass the time, sometimes too quickly!
Because I am writing about developments on the web I look for cutting edge stories.
The first was a story that was quite inspiring a young web designer Feross Aboukhadijeh was given a job on Twitter.He had been the first to code a new version of You Tube that offered instant searching.
Take note good work can get you your dream
The other thing I was involve in was a discussion with the CEO of Twitter Evan Williams this is the man who's company developed this software that I am using for my blog "Blogger". He was discussing the new Twitter version at the moment. I was able to get him to answer a question from me about some of these changes that may not seem much but with one million followers it is nice to know my voice was heard.

Things in my life have been moving along with a few days where it has been quite hard to breath and I realise that the number of these days will increase as winter gets nearer.
The trees are turning brown and I am planning my trips to the local arboretum for pictures, Next Thursday 23rd September my Camera club starts a new session for anyone who missed my winning picture from last year it is   Eagle Eye
I am looking forward to more wins in the future competitions, watch this space!
 Finally I was surprised  when I looked in my Email to find That I had come in the top 20 of a twitter game called Artwiculate I have been playing sporadically for a while, usually only put one entry per day. The idea is to tweet the word to illustrate its meaning in the most amusing way. This will get you  retweets and votes from fellow players.
So I thought I would post my certificate :-)

 If you would like to see my tweets and the other words I have done you will have to join the game on Twitter.

Organ donation: Facts and Figures from NHSBT

• Three people die in the UK every day due to the lack of a suitable organ.
• 8,000 people in the UK are still on the transplant waiting list despite the significant effort being made to increase the number of donors.

In 2009/10:

• Deceased organ donation increased by 19%⁴ . With 959 donors saving and improving the lives of countless patients, this was the most successful year ever. We also had our highest number of living donors, meeting the target with a total of 1,026 donors.
• As a result, the total number of organ transplants carried out in the period April 2009 to March 2010 was the highest ever seen.
• We transferred all existing Specialist Nurses into NHSBT employment, in new teams, in new offices, with new IT equipment and newly resident in hospitals across the UK. We appointed new staff so that we now have 190 Specialist Nurses for Organ Donation (SN-ODs). This work will deliver consistency in ways of working and a clear emphasis on organ donation for all NHS Trusts.
• We worked with the NHS to ensure the appointment of 174 Clinical Leads for Organ Donation, the establishment of 138 Donation Committees and the appointment of 122 Chairs. We started work to provide them with the tools they need with an innovative Professional Development Programme.
• We commissioned 13 organ retrieval teams across the UK working to agreed specifications and standards.
• We completed the roll-out of our Electronic Offering System (EOS) to almost all transplant centres to speed up donor registration and organ offering, and further developed the electronic Potential Donor Audit.⁵
• We launched the first UK-wide public awareness campaign to encourage more people to join the Organ Donor Register and discuss their donation wishes with their families. As a result there are now over 17 million people on the Organ Donor Register.

please sign up HERE

What the Blog is Happening?

As I write this blog about my life and my tribulations, I know that life is moving on for others I follow. They are on my blog list and some have been having a hard time.

jodiecf.blog.co.uk - Transplant List(England)

Jodie a Cystic Fibrosis sufferer who is waiting for a double lung and heart transplant. Has been having a particularly hard time and she is presently in hospital and has had both lungs collapse she could do with some support and comments on her blog to encourage her. Please have a look and read her story. I sincerely  hope she get better soon and receives her new lungs and heart.

Anything But Ordinary...- Rachael Wakefields blog (England)
After her lifesaving double lung transplant in march things have been hard with her spending a long time recovering.Then a while back she was readmitted to hospital she then got pneumonia and is suffering from second bout of rejection at the moment.I hope that she is able to sort out her problems and get back out into the world to use the lung she had been waiting for for so long.All the best Rachael thinking about you get well soon.

Victoria Glen(Scotland)
A lady with CF. Got new Lungs on 16th May and has had a few ups and downs but is doing good.She has been going out and about had a new lungs party recently and had a day in London watching musicals (the photos are on her blog) even she has had some rejection problems although they are under control.
Looking forward to your article coming out in October.

Past the Point of No Return - Victoria Tremlett(England)
Victoria another lady with CF is having a hard time I wouldn't lie and as she has been waiting a long time is quite worn out with the whole process.I follow her on twitter and after the post on her blog I know that she is a bit better now and has got some new furniture and is happy with that. But as to the rest of the problems they will not be totally resolved without a lung transplant.I am think about you Victoria wishing you all the best. Willing you to get that call. 

My Lung Transplant Years - Christopher Green (USA)Christopher lives in Westlake,Ohio . He has continued to relate his story about growing up and the history of his illness while letting us in on a great life spent working in local politics and memories of his folk along the way. Chris uses oxygen regularly and has been attending rehabilitation sessions to get him fit he is hoping for new lungs.

Chopped Liver - David Kallin(England)

David has been having a reasonable time while waiting for his liver transplant he has been able to continue work for the most part.He say on his blog"However, if, as in my case, I am able to function fairly normally, save for bouts of colangitis, then dealing with the situation is less straightforward. How much longer can I get away with a failing liver? Weeks? Months? Years?."
He is active on twitter and provides a great insight into his world of his work, music and home life with his young son.I am happy that he is well, and glad that he is helping the cause of organ donation on his blog every entry making me feel a bit guilty for not doing the same.He is presently preparing a article for the British Liver Trust to give others a insight into his life.You can follow him to.Cheers David

The Blog Blog - Bree (Canada)

Bree is also just over a year away from her lung transplant and loving it.This is what you get with Bree, she speaks her mind and say it how it is.

She has just a while back written a letter to her donors family.

I would like to take some quotes from the letters as it illustrates how much of a change a lung transplant can make She has done really well and is now employed doing a job she loves and walking a lot.

She says of her blog

"I will say all the things you are afraid to....and I will ask all the things you're too scared to...This is my trek through pre and post lung transplant courtesy of a lung condition called Bronchiectasis. 
The letters tell you more:
A year ago today I can recall exactly what I did: I baked 2 loaves of bread, one being cheese and onion. I had caught up on phone calls and emails and was mentally making sure everything at home would be okay. I knew I was dying. I couldn’t brush my teeth and breathe at the same time without having to lean over the counter and rest to take a breath. Using 5L of oxygen didn’t matter – I simply couldn’t do it anymore. I was simply exhausted in every which way imaginable, and the sheer physical pain of feeling your lungs shrivelling up and dying within you was unfathomable.

I was just 23 years old, and this was my life.

One year later things are very different. I am healthy, I am pink, and I am breathing the way a normal 24 year old girl should. This morning I woke up bright and early and took one of our dogs for an hour and a half walk with my sister. Then I made a cup of tea and lounged on the couch with the other dog and watched Shark Week. My how things have changed.

But the thought that somewhere out there your family continues to grieve is enough to bring me to tears. You will never know what your donation has done for my family and I. I cannot put into words how it feels to take a deep breath in and feel it resonating at the bottom of my lungs. Seeing my chest rise and fall the way it should, instead of having it never move and breathing with my stomach as I used to never seize to amaze me. It is a sensation that will never grow old.

In two weeks, I will turn 25.
Hope really hope you will have many more Bree :-)

(I reproduced these excepts from another blog http://www.mervsheppard.blogspot.com)

So how am I?
I am doing good,
Waiting and hoping for a call,
but aware that things could be a lot worse than they are.

I recently asked people on Twitter what is the most important thing to you? Many answers were offered,My son,My boyfriend,My wife,Twitter,My children,even one kind soul who said me getting a transplant:)
my work ( no just joking no one said that ) 

But one thing no one mentioned was Good Health without that life can become hard work. Look after yourselves please and I wish you all good health.But for people on the waiting list for a transplant there is hope in the future.

                                          

So I will take a lesson from David Kallins blog, and finish with a request for you to think about becoming a Organ donor.Click on the flashing heart in the left hand column near the top of the blog.
If you are a donor already please email a  link from this blog to a friend who isn't, or who you think would benefit from reading it
You can do that from the bottom of each post or using the Toolbar  + sharing  or even "like it" on Facebook  Thank you for spreading the word about Organ donation :-)

Holiday is over Back on your Heads!

Holiday is over and after a three and a half hour trip back that was very trying to say the least (usually two and half hours) we arrived home.The first night we just crashed out and the next day the grass needed cutting and we did some shopping for all the things we have run out of.

Now normality has returned with the usual moaning and squabbling from the kids and a list of things to do that were put off before we left.I rang Harefields hospital and told them that we were back home and my mother visited and I gave her the gifts we had bought while away.

Why the strange title for this post? it comes from a joke that I heard and still makes me laugh now;

A man dies and ends up in Hell and the Devil says to him you have three choices of where you want to spend eternity and points to three doors.
The man says can I have a look first before I make my choice the Devil agrees
He opens the first door behind is fire,brimstone and people burning in agony."Don't fancy that" says the man,
He opens the second door there are people being whipped and beaten."Don't like the look of that"he says
He opens the third door and there are loads of people sitting waist deep in sewerage drinking tea.
He takes a moment, then he decide. "It has to be the third door" he says.
He goes in the third room and  the door closes behind him.
"Right" says the Devil, "Tea break is over now back on your heads"

I am not suggesting that my life is like that joke, but life has a way of throwing up those sorts of unexpected outcomes at us everyday and it doesn't matter if you worry or not they still happen.
People often say "I hope you don't have to wait to long for lungs". But people never say "I hope someone will die soon".But the two statements mean the same in the real world.
Human beings are very good at protecting themselves from the truth of their own behaviour ,but worry about things that they can't do anything about.

Well my birthday is nearly here and 8 days later I will have waited on the list one year. A interesting but stressful one but one filled with new experiences not all fun.
I have done a lot more than I thought I would be able to.Met some great people online through Twitter and other sites I use. I have talked to famous people and ordinary people with extraordinary lives. Followed three people who have had transplants watching them recover,some quicker than others.Waited with others like me still to receive the gift of life.

Started this blog and continued to write it! Got published on another blog as a guest.Started to run a website, learning a new format and extending my knowledge of the web.Got commended in end of year competition in the local Photography Club. Hoping to take more winning photos when it starts again in September.

The only down side to this time of the year, apart from being one year older. Is winters approach,that is something I dread,but with the advent of the Autumn, I hope though I can get some good pictures :-)

On that note I thought I would post some of the pictures I got of Brighton on our last day out before our holiday finished.

Brighton Pier

Walk on the Pier

The pier from the beach

Seafront

Watching the waves

Not quick Enough

Brighton Pavilion

Fountain

They are" Under Starter's Orders"

The weekend is over and the last few days before holiday are upon us and I haven't done much!
I did manage to get mobile broadband together and have a shiny new dongle from T Mobile in a box waiting for the starters gun to go off.

This will allow me to continue with my updates on the Blog, keep up with my friends on Twitter and the kids can check Facebook while we are away.How Dependant we have become on the web!My mother in law who has no need of more, has maintained her Dial up connection to the web and so I felt that it was time to take the plunge and go mobile.

I have a few thing to sort out this week I must get some extra medication. We have a delivery of Oxygen coming on Wednesday when they will read the meter on the machine and service it. So hopefully I will have a rebate cheque waiting when we come home, after spending all our extra cash on holiday.I have been using the oxygen most of the time, so with any luck it will be a good one.

We are hoping to be at Sussex for the weekend as I hope to attend the Eastbourne Airborne show that starts on Thursday and finishes Sunday I have been in the past and have got some good pictures of planes from it.Again as always, it will be dependant on me being able to get a parking space near what is happening, fingers crossed on that. I think that we will be able to see something if the weather is good.

My plans, apart from that, are flexible. The kids what to go to Brighton for a day out, I what to get some fish and chips, from a great shop on the sea front, that uses fresh fish bought from the fishing fleet in Hastings.Another thing that always figures highly is penny arcades.I don't doubt that I will be returning with many pieces of tat by the end of the holiday, won with numerous 2pence pieces.The sea beckons but I will not be in it this year. I will have to be content to look and hope for the day when I will be able to swim in it again.
I thought that I would finish the blog with some pictures, from the last  Eastbourne Airshow we attended.

Helicopters

Lancaster,Spitfire & Hurricane 

One of The Red Arrows

Day to Day Again

With all the tweeting I have been doing over Transplant week I have neglected the blog posts somewhat. There have been some changes in the layout and I have added another person to the blog list.

Please look at the new blog by Victoria Glen. She is a lady in Scotland who has only recently had a double Lung transplant.Victoria is spending some time in hospital this week getting treatment for a mild case of rejection and could do with some moral support,so read her blog and add some comments to make her feel better.

I was also able to tweet with David Kallin during transplant week.
He writes the blog Chopped liver which I have followed on this blog for a while.He is waiting for a liver transplant.
 A great guy who will help you if you are in business.He runs Best Of Barnet and you can contact him for all sorts of business advice at David Kallin he says " Want to grow your business through thebestof Barnet – I will donate your first 2 months fees to my Liver Charity." 


There is also some good news about me. I have been offered a website to run. It is in the early stages but it is giving me a focus,while I wait for my transplant.I will post up links to the site when it is running well and outstanding issues are sorted.It will be a site to share social media information and any contributions would be welcomed.

Something else Positive that has happened. I was contacted by a COPD website in America who like this blog and have asked me to write a short piece for the website blog as a guest blogger. Again I will post more about this when the post is publish.

As you can see I will be busy so if I don't update as often as I have been for a while please don't feel like I am neglecting my loyal readers and I promise if anything happens I will post info on here if I can or on twitter where I am @UKCybernaut or my Daughter will update the news about me though Twitter  and you can read about it on the widget on the blog or if you like you could join Twitter and follow me yourself. As long as the whale doesn't turn up

No Twits its got to be Twitter

What a eye opening experience it has been over the last few days since I started to use Twitter.It is much more dynamic than Facebook. Thanks to #Ducansdream I have a great bunch of new followers and have had a few more hits on this blog.It is nice to think that people can get a insight into the life of someone on the list because when I talk to people about transplantation they say when are you having your operation? If only if was that easy,I hope that my blog is interesting enough for people to visit again but if one more person signs up for organ donation that is good enough.
My daughter went to London  to visit graduate fashion week at Earls Court as part of her school textiles course. She loved every minute, came back with piles interesting give-aways and was talking about a needing a new camera and bemoaning all the people with large DSLR who were blocking her view.she did get a few pictures on her phone but I understand how frustrating it is when you havent got a camera and something is going on you want to capture.I am debating the possibility of a new compact camera for myself maybe a Canon powershot s90 or a Panasonic LUMIX DMC-TZ10 as I am finding carrying the DSLR harder now but I would really love a new Canon EOS 550D and a macro lens but that is for when I get my transplant and can put it to good use.I may go out and see what Jessops can do local and if I can play with both to compare
but with Oxford parking is always a problem for me so I will see.
Finally here is a great site I came across for everyone who likes to draw and paint it is a online application that is a comprehensive as I have come across yet.
sumo paint  it is great, loads of brushes and effects completely free. I did a quick picture in 10 mins to show some of the thinks you can do but be inspired by some of the art on the site which is much better.

and another site I was told about by a friend and member of Transplant cafe cathy. It is a site implementing the latest HTML standard HTML5, this is the future of the web and the effects that can be produced are amazing you will need to be using Firefox 3.5 Safari 4.0.2 or Chrome,as Microsoft Internet Explorer may not view it correctly and is very slow. See what you think at HTML5 Experiments